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Life-limiting illness

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Original poster

A thread for those supporting relatives with life limiting diseases.

778 replies

CharleyDavidson · 13/07/2015 19:42

I know a lot of people come onto here because they are suffering themselves but I wondered if there would be a use for a thread for those who are supporting those who are suffering. Being strong for someone else is HARD and this could be a place to discuss the things that we are up against.

My own dad has a prognosis of a few months for a cancer diagnosis and it's just awful to see how ill he is and how sad he is about things. :(

OP posts:
frazzled3ds · 15/12/2017 07:11

Thank you x

MyGuideJools · 15/12/2017 19:16

So sorry frazzled Flowers
I felt privileged to be with dad as he left us, like you we knew he was ill but thought we had a bit longer with him.
Flowers for everyone suffering today.

frazzled3ds · 15/12/2017 20:22

We all thought he'd make it through Christmas, he himself did, but it was not to be. The speed of deterioration caught us off guard and there's almost a feeling of having been cheated out of the time we had left. Daft really, as he was very much on borrowed time having exceeded the 6-9 months the doctors reckoned he'd got.

Thanks to all here, whether you're in the middle of it all, looking back or facing what is to come.

maggienolia · 15/12/2017 20:34

Sorry for your loss Frazzled.
Dad's home and in his hospital bed now.
He's on heavy morphine so sleeps most of the time.
I haven't been able to speak to him for weeks, it feels in a way like we've already lost him.
Cancer"s the pits, it really is.

frazzled3ds · 15/12/2017 21:14

Oh Maggie, I'm so sorry. I hope that he continues to be peaceful. Cancer is indeed the pits - there are other words I would use ..... !!

Waxlyrically · 15/12/2017 21:24

Hello I'm back again. DM was given 3 months in March (bastard cancer) but is fighting hard and has begun a new chemo regime. I'm not sure if it's easier on her, physically, or harder - conflicting advice - but I do know it's the last shot and that things have spread. I am so sorry for those who have lost loved ones at this difficult time of year . I'm struggling with our situation, (how selfish does that sound), so I can imagine how difficult it must be Flowers for you all

TheOtherGirl · 19/12/2017 21:22

My Mum seems to be sinking fast, and we still haven't had the official prognosis because her blood tests got muddled so her biopsy isn't until this Friday.

Despite being on strong steroids to stop the brain lesions growing she says she feels much, much weaker and far more ill than when she was so nauseous and being sick all the time? I don't quite understand that as she 'looks' so much better to me and seems to be walking much better. But she insists she is much worse and can only shuffle not walk.

She is saying she doesn't think she can live on her own much longer (she lives in a private sheltered housing complex) because she feels so ill.

If she starts chemotherapy or radiotherapy and stops the steroids will she feel better in herself? Stronger?

If she can't live alone I'm at a loss as to where she could be? I now work 4 days a week and our house is old and full of steps/stairs everywhere. But surely it would be far too early to even think of a hospice (hate even typing the word)?

Also does anyone know if her brain lesions + steroids might affect her personality? She's become very snappy, almost aggressive and is refusing to join in with any of the activities at her place because 'people stare at her'. But surely even if some do, there will be others who won't and who will be company. If I'm not there, or her sister, then she is just sitting on her own which just breaks my heart Sad

Sorry for rambling on. I just feel like she is so changed so quickly, that I've lost her already Sad

untoldstories · 20/12/2017 01:54

Could you have your Mum to stay with you for a while?
I say this from experience, my Mum died from cancer, I Iive a long way from where she lived but I spent as much time as I possibly could up there sorting her carers and her needs.
I have regrets, I wish I had been with her more when she was scared and wanted me.
I know at one time I was the only person who could make her comfortable in her bed.
These things matter not just for your Mum but for you in the end.

TheOtherGirl · 20/12/2017 15:59

Thank you untold. She did come and stay with us for 4 weeks after she was diagnosed, and it was okay because I took some time off work.

But I'll be back to working four days a week after Xmas, so I just won't be here during the day and some evenings.

kernowgal · 20/12/2017 21:11

Just spoke to my dad. Mum's consultant came to see them earlier and he's decided that mum's too ill for chemo. So it's a managed move home with palliative and end of life care. No idea of timescales. Given mum's current condition, I don't think it'll be long.

Fucking cancer. Fucking fucking cancer.

TheOtherGirl · 20/12/2017 21:27

Oh kernow I am so so sorry.

My Mum's GP told me to be prepared to hear that chemo or radiotherapy might not be 'beneficial'.

kernowgal · 20/12/2017 22:16

Thank you. And yep, it wasn't a surprise given how ill mum is. The consultant had said that the chemo itself can kill a percentage of patients, but she was due to start 10 days of very intensive chemo. There was another chemo option offered that was more about relieving symptoms but we thought at the time she was well enough to go for the full-on stuff. Except she then got pneumonia and it's been downhill ever since.

kernowgal · 20/12/2017 22:18

And I'm so sorry about your mum too. It's just the most horrible disease.

MyGuideJools · 20/12/2017 22:36

kernow shit news. That's what happened to my dear dad. The Drs spoke of chemo when dads infection went. Except it was pneumonia and never went so dad never got his chemo. Tbh I don't think his body would have coped with itSad
Fucking cancer indeed!! My thought are with you all going through this shit.⚘

Kernowgal · 21/12/2017 12:34

Thanks MyGuideJools, and sorry to hear your dad went through the same thing. She's beaten the pneumonia but it's opened the door for all manner of other infections and she now has no neutrophils and she's extremely weak. I don't think her body would cope with it either, and I think the consultant's made the right call, as devastating as that is for us all. She was facing six months' worth of brutal chemo/radiotherapy and there was no guarantee it was going to work.

Was your dad at home at the end? I don't have any idea what to expect or how long it might take.

The more I read about AML, the more I realise they are just scratching the surface of what it is. Bloody horrible disease.

MyGuideJools · 21/12/2017 15:47

kernow dad was sent home with oxygen and basically just left to it with an oncology appointment in a months time. But 3 days after his discharge the GP came out as a routine call as he was on oxygen. The GP didn't like the sound of dads chest and sent him back into hospital. Dad went down hill really quickly. He was on 2L of oxygen at home and straight onto 10L in hospital.
He died 4 days laterSad
He was talking to us up until the last day, then his breathing got more and more laboured and he just went to sleep. It was quite peaceful.

Kernowgal · 21/12/2017 21:28

I'm not sure if they'll give mum oxygen. She's on it from time to time as she gets breathless when her haemoglobin gets low, but I don't know what the plan is with transfusions (currently once or twice a week). All questions to ask I suppose.

MyGuideJools · 21/12/2017 21:38

Yes ask lots of questions, I wish I had asked more!...I wish you all the best⚘

Kernowgal · 21/12/2017 21:47

Thank you. x

I've just scoured the Macmillan site and found some really useful booklets so have had a good read and sent them on to my dad and brother. My dad sounds completely overwhelmed by it all so anything I can do to help in practical ways will hopefully be well received.

It's very sad that we're all here but also very helpful and/or reassuring to hear from people who've been where we are or are going through it too. I'm very grateful.

maggienolia · 23/12/2017 03:07

Back again..just had a dream that it was my daughter that was dying. I think it's my brain transferring it from thinking about my dad IYSWIM.
He can't have solid food any more but manages soup and fruit salad. Nurses have taken over from the carers now.
Just sitting here in the dark looking at the Christmas tree. Next time we have it down he won't be here.

Kernowgal · 24/12/2017 00:33

(((maggienolia))) mum's not able to eat solid food either.

I visited today for the first time in a fortnight (I live four hours away) and despite my dad's warning that mum's mouth looks really sore, I wasn't prepared for how awful she looks. I was horrified but obviously didn't let on. It is just breaking my heart to see her in so much discomfort and I wish there was something I could do to help, but I can't.

She's being moved home or into a hospice in the next few weeks but I can't bear the thought of her suffering much longer. But I am also so scared of losing her. I don't ever want to lose her. I feel so torn.

It's fucking awful. My poor poor lovely, beautiful mum. She doesn't deserve any of this.

maggienolia · 24/12/2017 11:19

So true, none of them deserve this.

I sent dad a photo blanket with a picture of the girls on, which cheered him up.
I also spoke to him yesterday for the first time in weeks. Only a few words bur it meant so much.
It's going to be a year with so many changes ahead.

Kernowgal · 24/12/2017 23:04

Trying to write a Christmas card to mum, knowing it's her last.

I think this is the hardest thing I've ever had to do. What the fuck do you write?

Kernowgal · 26/12/2017 23:27

I feel so desperately sad. Had a lovely long visit with mum today. The palliative care team were in with her when I arrived and I got to ask them some questions about next steps. Once she's home, they no longer give blood products (unless she travels to local hospital, which will be too difficult for her) so it's only a matter of time. The nurse said it wouldn't be long, maybe a week or two.

Mum and I spoke about it a bit and she said "I hope it's not long", and I agreed, but told her I wished I could have longer. To hear your own mum say she's had enough, she's tired of it all, is heartbreaking. But I completely understand. I don't want her to suffer. But I can't deal with the idea that she'll be gone soon. I held her hand for ages and I can still feel it now. I shall cherish that. This is so, so hard.

MyGuideJools · 26/12/2017 23:40

kernowgal FlowersSad It's so so hard. There are no words. Just tell your mum how much you love her(which I'm sure she already knows)
I was so glad I could tell my dad I loved him and what an amazing dad he was. It felt a privilege to be there at his last breath. So heart breaking tho xx